Discuss Diagnosis and Natural History

The Genetic Counseling Session

Current genetic counseling job tasks were determined by the American Board of Genetic Counseling as the outcome of a Genetic Counseling Practice Analysis (Hampel et al., 2009). The following is a list of the Diagnosis and Natural History tasks:

1. Formulate counseling agenda
2. Integrate natural history, characteristics, and symptoms of working diagnosis
3. Incorporate client specific findings and needs
4. Develop management plan
5. Convey information about the following:
        a. diagnosis/indication
        b. etiology
        c. natural history
        d. variable expressivity
        e. penetrance
        f. prognosis
        g. prevention
        h. treatment
        i. management
6. Assess client understanding and response
7. Tailor management plan according to client circumstances
8. Modify counseling based on client’s understanding and response

Many Somali immigrants will only seek genetic counseling after receiving a referral from another provider. Most will not know what genetic counseling entails or understand the potential benefits. This situation applies to our case study, as the family was referred after a routine medical screening for refugees. Genetic counseling Somali refugees may be conducted through an interpreter, which presents challenges to communication and time as well as opportunities to build rapport and trust. When beginning the counseling session with this family, the counselor should “first introduce her/himself and ask all the family members to do the same. While only one member of the family may speak with me throughout the session, [this inclusive introduction] allows me to welcome every member of the family. I feel this helps show that I acknowledge that the family is an important part of the patient’s care” (Runyon (2010), personal communication). The genetic counselor should then discuss the nature of genetic counseling. It is important that the clients understand the purpose of the appointment and be aware of the anticipated proceedings. The genetic counselor should make an effort to assess acculturation. During this step it is crucial to establish trust with the family; some Somalis have acknowledged withholding information from providers due to mistrust. They may harbor fears that their confidentiality could be compromised during the session. Greeson, et al. (2001) suggest using empathy to establish this trust. By recognizing the patients’ potential doubts about the session and asking questions regarding the patient’s perceptions of and hopes for the appointment, a counselor can build rapport with the client (Greeson, et al., 2001).

It can be difficult to describe genetic conditions to a family of a different culture. When explaining sickle cell anemia, a counselor may need to explain the basic genetics behind inheritance before describing the specific disorder. The counselor speaking with Asad’s family might say the following:

“The body is made up of millions of cells. Each cell contains information known as DNA that makes us who we are today. Our DNA is located on structures called genes, which are located on the chromosomes inherited from both parents. There is no operation to fix DNA, genes or chromosomes if they are changed (or damaged). This is the case with your son, Asad. He inherited two changed genes that cause sickle cell disease and there is no way to fix them. You are already doing a good job keeping Asad feeling well. Let’s talk more about how to keep Asad from having fevers, headaches and pain.”

Pages: 1 2 3 4 5 6 7 8 9 10 11 12 13 14